Our big fat medical vacation '09...continued...

I thought I should wrap up the summer before I dive into the fall happenings of which there are many. I have so many thoughts/ideas/projects rolling around in my mind that I need to write a bit more often.

So....after our wonderful visit with Bill and Kathryn, we headed into downtown Chicago for our stay at the Hyatt on Wacker. The Toxoplasmosis Study sponsored by the University of Chicago is always so gracious in providing us with our family's plane fare and a night at this centrally located hotel. It just so happened that at check-in we discovered that none other than our favorite president, Mr Barack Obama, was to be appearing in the hotel that night at a fundraiser. The entire place would be locked down early before dinner, so we quickly skipped out with our friend, Margo - who we met years ago during our Telluride Film Festival Days. She and her husband and gaggle of lovely daughters live in Lincoln Park, so we took in the zoo. Zelda wrestled with her stuffed lion, thanks Margo! and Creed whined non-stop about wanting to see Obama. "Why can't I go to the fundraiser?!" Luckily, their attentions were diverted by capable babysitters named Anna, Madelyn and Olivia. That convenient arrangement allowed for the parents to have an evening out at Bruno's latest new restaurant.Margo & Creed waiting for Obama's helicopter...

The next day we were up early to be at the University by 7am. Doctors, nurses, and our favorite: the Oracle - Dr Rima McLeod - to whom we attribute the success and health of our children, were all on hand to put us through the paces. The study should last the lifetime of the children. This was our 3rd trip to Chicago and as the twins get older, the trips will be spaced out a bit but each one involves a developmental assessment, blood work, eye exams, visits with the neurologist, infectious disease specialist, and opthamologists. It's a day's work and despite our exhaustion, we were intent on seeing our friends, Gemma, Rowley and their imp of son named Fin. He is also a toxo baby and we had met them on our last trip to Chicago and immediately felt a bound with this strong, caring and fearless family. The evening was spent at Millennium Park listening to the Symphony and then the entire lot of us descended upon a nearby restaurant. Imagine the delight of the server with 3 toddlers - Fin with his huge smile, crackling and swinging his paper, Zelda needing to get up every 5 minutes to go outside and walk, and Creed demanding his french fries and water and anything else he could get his hands on. It was glorious! And the restaurant staff was extremely gracious...the Toxo Tribe at the Symphony...


We left the next day...as Zelda pushed the double stroller through the airport with her lion in one seat and Creed's tiger in the other...until the next time, Chicago, we love you...

We're off to see the Oracle...

So, tomorrow we head to Chicago.

The twins are enrolled in a study at the University of Chicago that follows babies born with congenital toxoplasmosis. It is conducted by Dr Rima McLeod and her team of doctors. We love Dr McLeod. We call her "The Oracle" and "The Toxo Guru" among other names. She is amazing. If we can thank the Tiki Gods for saving the brains of the twins, we can thank Dr McLeod for saving their lives.

In the fall of 2005 when the twins were born at St David's Hospital here in Austin and then transferred to Texas Children's Hospital in Houston, Dr Ralph Feigin at TCH put us in touch with Dr McLeod and her study. Upon our initial attempt to contact her, she responded immediately. The doctors at TCH were overwhelmed by the extreme prematurity of the twins as well the obvious surprise of the toxo infection. Dr Mcleod quickly came to our rescue by first answering our questions and then weighing in on their care. She was the one that suggested the VP shunt for Zelda and managed to convince the Tiki Gods to perform the surgery. She was the one who insisted on charting their drug regimens according to their weight gain. She was the one who followed their blood counts when white blood cells or clotting issues were apparent. Dr McLeod found us the connection with Dr Tawansy in California when all of the eye doctors at TCH wouldn't touch Zelda for surgery.

Last year we flew to Chicago to enroll the babies in the study. They were infants, newly released from the NICU. They had shaved heads from surgeries, squirmed and shrieked when blood was drawn and their eyes were examined. This year they will see the same team of experts: infectious disease specialists, eye doctors, neurologists, developmental therapists; they will have blood drawn, have retinal exams, have their hearing tested. I am so excited for the doctors to see their progress. They have hair! they have grown! they walk and dance! they babble and laugh! they eat cheerios, fish and bananas!

I remember one of the first things that Dr Mcleod told me in her quiet voice over the phone at the NICU bedside upon positive confirmation that our twins had this devastating infection. She said "We have seen kids with proper treatment grow up and lead normal lives and go to college." And we're not going to let go of that dream - that is unless THEY decide that they don't want to go:) Then they can just travel through Europe instead.